8 replies to this topic

[mrsfish_94]

Help! My daughter has tested positive for celiac disease. But the GI DR. wants to do a biopsy...does she really need to?...if a blood test comes back positive. I would love to hear about what other parents feel or if they went through it.

mrsfish

[MLO]

I am not an expert. My daughter was diagnosied with Celiac Disease a month ago. Does she actually need a biopsy? I am not sure. I was told by several specialist that it is better to KNOW for sure that she has celiac then putting her on a diet that will effect her for LIFE and not "really be sure". I know that others will argue with me but I have done a lot of research since my 9 year old daughter was diagnosied. My daughter did have a biopsy and truthfully I am glad. I had it done at a children's hospital and I know for sure that this diagnosis was correct and I am not jumping to conclusions. I realize the fear of the unknown and the feeling that their could be complications. I have family members that would rather lose a limb then even discuss that they could have this. My husband and I are still waiting are results but my 4 year old daughter at this time, does not show any signs with her blood. I will watch her like a hawk until she grows up as far as symtoms go. I suggest you go with your heart but I do believe that it is in both of your interests to make a "100 percent diagnosis".

Good luck.

[DLayman]

On the other hand.... there are several out there who have had a negative biopsy. So keep that in mind. It is not a really particularly difficult proceedure, but it is an invasive one..
Your body just doesn't put these antibodies out for fun.. and an endoscopy is really looking for 'end stage' celiac where the antibodies have gotten so out of hand that they are doing damage to your own body..
I would say if the blood work shows a high Ttg antibody level you might want to see how bad it is in there.. other wise mabye not and just go with the diet.. and do another blood test to see if the antibody levels go down.. any one here will tell you THAT is the 'gold standard'

Denise

[SadiesMomma]

I would definately recommend doing a biopsy anyway.. They may already know about celiac disease in your little girl but its always to be reassured that nothing else is the matter. It may ease a few things too.. it will let you know the damage to the villi and how to help... other than a gluten-free diet.

Good luck!!!!!

[lauradawn]

I made my decision based on the blood work... .how signifcant was it...how conclusive. The biopsy is considered the gold standard... but my husband and I decided that we would not put our little ones through the biospy. I also chose not to do the biopsy. The endoscopy is not that big of a deal. It's fairly quick and painless, but for myslef I did not see the advantages of going through it. If the diet makes me feel better, and my blood work was conclusive than what does it matter. If the Dr came back with a neg biopsy, I would alwyas wonder if it was wrong, and most likely still stick to gluten-free for life. So how would change things? Since I have celiac disease we decided that if my little ones tested positive on blood work, it would not be very beneficial to make them go through all of that. That was our feelings on it anyway.

[3boyzmom]

I am new to this site and new to the gluten-free lifestyle... came on to see if there were other people out there with similar issues. My 3 1/2 year-old son is the one were dealing with... he had a "Celiac crisis" in October of 2003 which had him hospitalized for 12 days in 2 different hospitals. The first had a positive anit-gliadin blood test come back which prompted a biopsy, which came back negative... sent us home and he resumed a "normal" diet and was in severe pain again. I decided, since he was pain-free only when his intestines were empty or when he was on a gluten-free diet I resumed a gluten-free diet and he's been fine ever since... except for the occasional mistakes...

now GI wants to positively diagnose by re-introducing gluten for 2 months and re-scoping.. I think this is a bad idea, so I am having him tested through Enterolab, just got the kit today...

I don't understand why more doctors aren't aware of this conditon, since it obviously affects alot of people.

My son lost weight and had reduced growth, he was 9 lbs. 1 oz when born in the 90% and dropped to 15% by the time he was 15 mos. old. Not once was gluten-sensitivity or Celiac's mentioned. He was tested for a hormone deficiency, of which there was none, and then put on a lactose free diet.. without any evidence, to quell the diarhea problem... then came Oct '03...

Anyone else with same problems and also, what was your child like when breastfed... was stool normal orangey color or green...??????

[seeking_wholeness]

My son lost weight and had reduced growth, he was 9 lbs. 1 oz when born in the 90% and dropped to 15% by the time he was 15 mos. old. Not once was gluten-sensitivity or Celiac's mentioned.

That sounds almost exactly like my older son (who is almost four). He was nine pounds at birth but dropped to the 25th percentile as he grew. The pediatrician didn't think it was remarkable (and neither did I; he was my first child and I was clueless about food sensitivities), especially since he embodied the "long and lean" stereotype of the older breastfed baby. The pediatrician chalked his diarrhea up to too much fruit juice. Thankfully, he never got to the point of a celiac crisis--his younger brother came along and developed sensitivities to several foods, which started me researching, and I decided to try the gluten-free diet for all three of us. I have been very happy with the results!

About breastfed baby stools, my older son's were yellow-to-orange, while my younger son's were yellow-to-green. I had problems with overactive letdown with both boys, but I think I had a much more significant oversupply with my younger son (who caught a virus at four days of age and spent 48 hours in the hospital, with me nursing him every hour or so to prevent dehydration and support his immune system!), which may account for the greenish stools. Though I am not sure; the greenish tinge persisted even after his demand caught up with my supply.

I hope this helps!

[mrsfish_94]

Thank you everyone for your info. I was not sure if she really needed to do the biopsy. Thank you for your advise.

mrsfish